Thursday, April 5, 2012

Am I a Hater?

So, it is April.  Autism awareness month.

Last week the CDC released it's new numbers for autism and the results are staggering, estimating that autism now affects 1:88 kids in the United States.

A lot of my favorite bloggers out there have dedicated posts to this shocking number, expressing outrage, bafflement, mystery, sadness, worry.

Basically all the things you get in droves on a daily basis as the parent of a child on the autism spectrum.

I had vowed I wouldn't make a similar post because there are so many of them out there and most of these writers express themselves way better than I can, but here I am on a day off from work, Maya is off at school and I could be sleeping, but here I sit typing, even though the joints in my right hand are aching, ringing that biological alarm which tells me to put down the keyboard and slowly back away.

But, I can't back away, I need to tell my truth, even if it is less original, less snarky, less angry, less edgy.  It's still my truth.

Lately the world of autism parents, seems to me divided into two camps - the lovers of autism and the haters of autism.  The lovers seem to be those who are trying to accept and embrace autism, who find it tough to separate autism from who their child is.  And the haters are the ones who hate that autism has entered their lives, how it causes their children to suffer, how it enters every single facet of their lives, how it can like a tornado destroy anything in it's path.

I am not a lover or a hater.  I do both in equal measure.

I love my daughter.
I love her personality and her take on the world.
I love a lot of what she says and does.
I love that although she doesn't understand her differences, she fights every single day to move forward - she's a warrior and a hero.
I love that she is kind to animals and to other children.
I love that she is somewhat protected from the criticism of others.

I hate that she has to struggle.
I hate that her development isn't on auto pilot.
I hate not knowing if she will be able to take care of herself as an adult.
I really hate not knowing if she will ever be able to read a novel or have a career or a family.
I hate that even the most routine stuff of life is something which has to be meticulously planned, thought out, organized, worried about.
I hate the looks and comments I get from strangers who just don't get it.
I hate not knowing if there is anything more I could do to help.
I hate the constant, unforgiving worry that I might not be doing the right thing for her.
I hate that I don't have the comfort of knowing that one day when I am gone that she will be okay.  
I hate that there is not one single nanosecond where worry is not part of it.
I hate not being able to take comfort in the phrase that everything will be all right.

Ultimately this is not the life I had imagined when my baby was growing inside my belly.  It is what it is.  I do think I try to make the best of it.

I accept this is where we are.
I accept that my daughter may not ever be able to do more than she can right now.
*tears welling up*

I focus on not letting the fear overwhelm me.
I focus on my daughter's happiness and use it as the measure of all things.
I focus on doing what I can to build her confidence, to take away her anxieties to encourage her to take the next step, however small.
I try to accept that I am enough for her, that I am doing the best I can for her and that it will be enough.

I've done a lot of thinking about the whole hating autism thing and I have, after years of contemplating, late nights, blog posts, good days and bad days, here is what I have concluded.

I cannot hate autism, although I can understand why some parents do.  And it's okay with me if you do.

The reason I can't hate it, isn't because I love it.  

I have hated things in life before and I can tell you that I am the kind of person where if I hate it becomes all consuming.  Like a fire, it will char a path of destruction through my everything, sucking all the oxygen out of our lives.  Hate and everything else in my life are completely and utterly mutually exclusive.  I know if I use my energy to hate autism, to hate what a wrench it has thrown in our lives, how it does make my daughter struggle, I won't have anything left.

I am a realist.

For me, if I want to help my daughter, if I want to do what I can to help her achieve the most that she can in life, I don't have the time or energy for hate.  I have to find the good, whatever it is, albeit in a not sunshiny-let's-all-eat-some-granola-and-sing-kumbaya kind of way.

So I log the good days and the bad days, I live, love and laugh with my beautiful daughter and I am enormously grateful that autism's grip on her isn't so bad, so all consuming and so tortuous that it owns her and overshadows everything else.

I am grateful that I don't have to hate autism.

That's something, right?

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